Jennie's MS Journey

Hi Everyone,

It has been a while since I have updated the blog so it’s a bit of a mixed bag this month.

Good News- It still does seem like disease progression has been fully halted. I have experienced NONE of the symptoms I was dealing with. Vision is 20/20 at all times of the day, no numbness, no tingling, no burning sensations, no knee buckling, leg weakness, my hands no longer shake and the dexterity is 100%. Fatigue is even slightly improving!

Something else occurred a few weeks ago which I find pretty amazing. When I was 5 I was in an accident which caused permanent nerve damage in my left foot. I’ve never had any feeling in the top 1/2 of my foot (pretty much just the heal). You could drive a nail through it and I would have no clue BUT I was in the shower a couple of weeks ago and I felt a warm sensation on my foot and toes. I was scared actually because one of my MS symptoms felt like hot water running down my calves and I thought maybe it was coming back. I was wrong!! I was just feeling my foot again. After 35 years of having a dead foot essentially, I now have full feeling in it and I can separate my toes which I have never been able to do. Also the color is now normal. At the end of the day this doesn’t impact my life at all but I have to think something is working since there is no other explanation as to why 35 year old nerve damage has been reversed!

Another positive is I’m off of all the medication except the anti-viral so my stomach is feeling a little bit better and my hair is growing!! It looks just like a wounded pineapple but hey, like me, it’s on the road to recovery;).

Not So Great News- I have had some pretty big hiccups this month in this crazy process. The problem I was experiencing over the summer has not rectified. In fact, the latent onset neutropenia possibly caused by Rituxan or Cytoxan has persisted and it is getting frustrating. Basically my bone marrow has been damaged from the aggressive protocol and so my body on its own is not really producing white blood cells. The danger in this is serious. Without constant neupogen shots (growth factor to multiply cells), my absolute neutrophil count is remaining way below 500. When your cell counts are critical, if you pick up even a common cold or an infection it is a race to get to the hospital and get it under control. (Knock on wood) I have been so lucky and have stayed healthy but it puts a lot of stress on the family and I’m most of the time isolating from most things as we never know which day it will dive and require the shot again. When I’m not I wear a mask. Speaking of the shot, it causes bone pain and nausea that is pretty excruciating, but luckily within 24 hours it clears out of my system. I also am getting infusions of a blood product called IVIG. This takes the antibodies from hundreds of people and basically pumps them into your body in hopes you acquire those antibodies protecting you from infection, and over time possibly raising the cell counts. I’m doing everything and anything the doctors tell me to do. I admit to being very disappointed this week because it’s just getting tiring physically and emotionally and there is nobody that can definitively say when it will normalize but the consensus among the team of doctors is that will recover. It’s a matter of time.

There is a very high percentage of people who undergo HCST for cancer or severe autoimmune disorders that experience anxiety and depression. They aren’t sure if it’s the transplant itself that causes this or the circumstances surrounding it but please keep this in mind if you are reading this and considering this for yourself. There have been some very very sad things in my group recently where people have had some very serious depression issues. Northwestern requires therapy in some cases but not all so my advice would be to consider this before undergoing the procedure especially if this is a struggle beforehand. On this front, I’m doing ok. Of course I am bored and wish I didn’t have to deal with any of this but in so many other areas of my life I see joy. I think I would feel more depressed if I hadn’t had done it. Trying to mask all those symptoms and things was getting really exhausting!!! I just feel so happy and lucky I may never have to worry about it.

Lastly, the best news remains the same as always. I just have the nicest friends and family ever. I have a constant worry that I’ll be “that” friend that always needs something. This has been so long and I’m pretty confident its not everyday you find people who unconditionally support you, and laugh with you. No matter how cloudy life gets, when you have that it’s always a bright shiny day. I’m so appreciative of each and every one of you.